By Margaret Pole
Bradley Mattes, president of the Life Issues Institute, observed, “Guidelines denying family members the ability to accompany an at-risk patient eliminate a patient advocate [emphasis added] who could halt or report abuse or facilitate communication on behalf of the patient’s wishes.” His sobering observations on discriminatory healthcare during the coronavirus pandemic brought to mind my father’s stay in a nursing home several years ago. Thankfully, no lockdown was then in effect. But what if there had been? I shudder to think of what the consequences might have been.
I had been caring for Dad and Mom at their home since early 2013. A multiple fracture in his left shoulder sent Dad to the hospital for a week in December 2014. Then he was transferred to a nursing home for rehabilitation. The hospital had given us little choice in this decision, since we didn’t have the proper equipment and support to provide at-home care.
Dad had mild dementia. I worried that the unfamiliar environment of a nursing home would increase his confusion and thus prevent him from remembering that this situation was temporary. I knew I would need to spend as much time as possible with him there, despite my other responsibilities.
I visited Dad daily for at least a few hours and sometimes for several hours in the evenings. He always brightened up when I arrived. After he was put into bed, I rarely saw any nurses or nurse’s aides check on him. Dad didn’t understand how to use his call button, so if no one checked on him, he couldn’t ask for help. I worried about him while I was gone, but at least I knew I could return the next day.
Mom was quite frail, so she was only able to visit him a few times, but her visits made a huge difference. Other family members, friends, and neighbors also visited him. Most importantly, our pastor came to give him the anointing of the sick, and he received weekly visits from our parish’s extraordinary ministers of Holy Communion.
Even with the blessing of this much social interaction, I’m sure the partial isolation of being in a nursing home depressed Dad and worsened his dementia. I can’t imagine how he—and our family—would have fared during the total isolation of a lockdown.
After a couple of days at this facility, my father (who was tall) was slouched over in his small, short-back wheelchair, with his head hanging down. He said it was because his neck hurt. Due to chronic back problems and old age, he couldn’t support his back and neck for long periods of time. The nursing home doctor finally yielded to my insistent request that they put him in a tall-back wheelchair.
I also discovered that Dad was being left in the wheelchair about 12 consecutive hours per day. The head physical therapist finally agreed to put him into bed for a nap after lunch. Between the transfer to the tall-back wheelchair and being able to nap, the slumping back and hanging neck problem improved significantly.
Around this time, a conscientious nurse’s aide showed me, on the sly, that Dad had developed a pressure ulcer. The head nurse claimed it was only “an abrasion,” but my niece texted photos of it to her husband, an experienced internist. He confirmed that it was a stage-two pressure ulcer and informed Dad’s physician (to whom we had transferred his care by then, to bypass the lackadaisical nursing home doctor). Dad’s doctor promptly ordered the facility to treat it as a pressure ulcer and send him for evaluation at the nearby hospital’s wound management clinic.
The head nurse was clearly nervous as she showed me they were now properly bandaging and treating the wound, and it was healed by the time we went to the clinic. The clinic confirmed my suspicion it was caused by sitting too long in the wheelchair.
Mealtime madness and mitigation
Prior to Dad’s fall, he could feed himself, but now he needed assistance, and he was a slow eater. Despite my explanation of his needs to the nursing home staff, he was left mostly unattended in the dining room. When the dining room had to be cleared, an aide frantically fed him as quickly as possible, which didn’t give him enough time to swallow his food or finish his meal. As a result, he was retaining food in his cheeks after meals. Therefore, I tried to be with him for lunch or dinner daily so I could feed him in his room at a leisurely pace. We greatly enjoyed this time together. Quite often he was peacefully dozing by the time I left.
Escape from exile
After a couple of weeks in the nursing home, Dad was rapidly declining physically, emotionally, and cognitively. He received 15‒20 minutes of physical therapy daily. But I saw no evidence of rehabilitation occurring. After a few weeks in the tall-back wheelchair, he was again stuffed into a short-back wheelchair and was again slumping over badly. I begged Dad’s doctor to order his discharge, but it seemed she was at the mercy of what the physical therapists told her.
I was elated when a therapist announced Dad would soon be discharged due to lack of progress with his physical therapy, but the next day the nursing home reversed course, on the pretext that he was suddenly doing some walking during physical therapy sessions. Skeptical of this claim, I hired a private-duty certified nurse’s aide to stay with him a few hours each morning and report back to me. She observed his physical therapy, and by her fourth day on the job, the therapists announced they would soon discharge Dad.
We brought Dad home on January 22, 2015, after six weeks in the nursing home. He was extremely weak, pale, and uncommunicative. By then we had obtained the equipment, supplies, physical therapy, and nurse’s aides needed to provide adequate in-home care. We soon realized he had severe pain in his right leg. An ultrasound revealed it was full of blood clots. His doctor prescribed the appropriate medicine, which brought quick relief.
If we had been locked out of that facility, would we have been able to get him discharged as soon as we did? It most likely would have been more difficult or impossible. Would anyone have noticed the above-described problems and addressed them? Probably not. If he had remained there much longer, I believe Dad would have suffered dire consequences resulting from medical complications, as well as the cumulative effects of neglect, isolation, confusion, and depression.
After just two days at home, Dad began a remarkable recovery—physically, emotionally, and cognitively—that continued for almost a year. Unfortunately, by December 2015, he was showing symptoms of terminal lung cancer. In March 2016, he passed away peacefully at home. We were and remain incredibly grateful to have had those priceless 14 months with him at home after his discharge from the nursing home.
|After two weeks in the nursing home, Margaret’s father began to decline in health rapidly.||Once he was able to go home, it only took two days for him to make a remarkable recovery.|
The lessons we need to learn
In a New York Times op-ed (“What’s Behind the Nursing Home Horror,” published on May 17, 2020), bioethics professor Charles C. Camosy condemned “a throwaway culture that . . . has marginalized these populations and made the nursing-home crisis a tragic inevitability” by sending coronavirus-infected patients and personnel to nursing homes, thereby creating “a raging wildfire of infection and death.” In a subsequent interview Camosy “pointed to a cultural trend of families pushing elderly members into nursing homes and forgetting about them, helping to explain why states failed to protect nursing homes from the pandemic.” (Matt Hadro, “A wildfire of death’: Policy, culture and coronavirus in nursing homes,” (Catholic News Agency, May 20, 2020).
This heartbreaking Minnesota newspaper headline, “Isolated during the pandemic, seniors are dying of loneliness and their families are demanding help” (Christopher Magan, Pioneer Press, June 19, 2020) confirms that nursing home patients are dying not only from the coronavirus but also the social and emotional effects of the lockdown. Magan cites three recent cases in which “social isolation” was listed on the patient’s death certificate as a cause of death.
My experience as caregiver for my parents in their own home (see “Mom’s Final Journey,” (halovoice.org, Newsletter, October 2018) and my father’s nursing home experience had already made me a strong advocate of home care for the elderly and disabled when circumstances permit it. What has happened during the COVID-19 pandemic has only strengthened that conviction.
I couldn’t agree more with what Alex Schadenberg, executive director of the Euthanasia Prevention Coalition, wrote in his June 1, 2020, blog post titled “Rethinking nursing homes. Supporting community based care.” Citing a study indicating that home care is vastly superior to institutional care and less costly, he asserted, “The recent reports of nursing home abuse and the horrific number of COVID-19 nursing home deaths, and other nursing home deaths, should make [us] not only think about improving nursing home care but [also] rethink nursing homes. . . . [T]he answer to the problem is to move to a system of home care.”
It’s long past time for a radical paradigm shift in our approach to caring for the elderly and disabled. Perhaps this pandemic will serve as the starting point. As Professor Camosy put it in his op-ed,
Times like this have produced major cultural changes in our past. If we do take a hard look, we may change more than just the way we treat older Americans. We may, along the way, find a way to push against throwaway culture in all its forms.
Instead of denying the reality of cognitive impairment, aging and death, could our culture begin to embrace it forthrightly in ways which lead us to honor the final years we have with the family members and friends who go before us? To honor the moral and social equality of every human being, regardless of their mental or physical status?
Let us pray that these changes will happen sooner rather than later!
Margaret Pole is a freelance editor.